Mom and me

Still, she was engaged with us on other levels. We could understand how she was feeling. She seemed to recognize us and her mood often improved a little when she interacted with one of us kids or with one of the many wonderful aids who helped take care of her. If you had gotten a cut or a bruise since your last visit, she might touch that part of your body. She was a nurse after all, she needed to care for people.

So what does this have to do with comedy? Well there were very few things that kept her attention in these last stages. In the earlier stages we had done crafts and puzzles and encouraged her to draw things. She couldn’t do any of these things after a while and one of the few things that seemed to capture her attention was television. She had her soaps that she always wanted to see and when the soaps were done, we would switch the channel to Hallmark and watch Little House on the Prairie or Mash.

One afternoon, they were running episodes of I Love Lucy instead of Mash and mom did something that she hadn’t done in some weeks, she laughed. It was a distinct and clear giggle. And it wasn’t some random event. She was clearly responding and laughing at the right moments. She got it and thought it was funny. Perhaps she couldn’t understand the words really, but some part of her brain still did get comedy. She wouldn’t be able to explain what just happened on the TV screen, but she knew it was funny.

After that day, my sister started buying all the DVD sets of I Love Lucy and watching it with mom became a frequent activity. Mom never got tired of it. Over time even her laughter became a little muted, but it never failed to elicit some giggles from her. I’m sure it gave her pleasure when few other things could.

So if you ever find yourself taking care of someone with dementia, I’d rent a DVD of I Love Lucy and give it a try. You might be surprised how much your loved one enjoys it. Let me know if it works for you.

And if you do comedy, remember how important it is to laugh. When most pleasures in life fail you, laughter can still break through.

In the mean time, I’ve been working on the IRC Improv Wiki. I wanted to get a few more pages going. I realized last week that there were no articles on Tina Fey, Jack McBrayer and Inside Vladimir. I have written a cursory entry for each and hope I can get some other people to chip in and expand them.

There is also a lot of stuff going on which is taking a higher priority right now. In the last couple of weeks, we have lost some of our staff that helps us take care of my mom, so we have been busy finding and training new people. That is somewhat stressful. Our longest standing worker gave notice two weeks ago. Today was her last day. She worked first shift with me and did a terrific job with my mom. It made things much easier for me to have her working first shift. We have found a good replacement, but it will take time getting her up to speed. I will be spending more time here at my mom’s in the interim, and that may translate into some more posts since I do most of my writing here.

I have been running again for the last couple of months, and I’m ready for some 5K races. As soon as the weather warms up a little bit, I’ll be out running different events on the weekend. I hope to run a dozen or more races this summer including some 10Ks and perhaps even a half marathon. Also, I picked up guitar last fall and I’ve been practicing a few times a week. I started a group class with the park district in Peoria. My goals with guitar are simply to keep it up, learn as many useful chords as I can so I can play a few songs. Both of these things are competing with my desire to write more. However, next week I will likely be able to complete a few of the posts I’ve been working on.

One problem is that I don’t have a dark suit. I don’t really have any suits, but I thought I could buy one and have it tailored in time for the funeral. But then, we switched plans, and it wasn’t necessary.

However, I am taking care of my mother, as I’ve detailed in some previous blog posts. She is still strong and could be with us for quite some time, however, things are progressing. That’s that expression they use, they being professional caregivers–progressing, not deteriorating, not winding down, not coming apart, certainly not dieing. No, the disease is progressing, another one of those perverse Orwellian twists of words that seem to cloud around dementia.

Sooner or later, I’m going to need that dark suit. I figured that I’d rather have one in the closet than have to scramble to get one when the time came. So, I headed to the local Men’s Warehouse.

When I walked in the door, the ratio of salespeople to customers was roughly three to one. A couple of them descended on me.

“Hello, what can we help you find?”

“I need a dark suit.”

“Alright, Tony can help you with that.”

“What’s the occasion?”

“A funeral.”

“Oh, I’m sorry for your loss. When is the funeral?”

“It’s not for some time.”

They look very puzzled at this point. For fucks sake, I’m not going to have to explain this, am I? You really aren’t going to make me explain that I’m buying a suit for a funeral that is months or even years away.

“Look don’t worry about it.”

“Well, if you need it for a specific date, we can help you with…”

“It’s for a funeral, but your regular time frame will be fine.”

It was an odd transaction, but I managed to get the suit and get out of there without having to explain much more. And I’m glad that when the time comes and I’m scrambling to get done all the things that will need to be done, I won’t have to go to Men’s Warehouse and talk to a salesperson about how my mother has died and I need a suit.

Mom with her Christmas Snuggie

with Kevin, the monkey

The monkey is from one of our last day trips out. Last July 4th, I took mom to the zoo. When we were in the gift shop, she seemed to like the orange monkey, so I got it for her. Recently the monkey has made a bit of a come back and has been sharing her chair in the TV room.

When we got the monkey, the home care aide who was with us said that mom should name the monkey. I jokingly said, “Name it anything but Kevin.”

The aide asked mom what she wanted to name it, she said, “Kevin.” Then she giggled. Thanks, mom.

Mom and Cindy watch the soaps as the rollers come out

It used to be that Sundays were the day. She would go see Cindy, then have lunch at her favorite restaurant, Panache, which is in the same mall. Last fall it became Fridays, since my sister had that day off and could take her. Then sometime after I moved home, it became Mondays. Mondays are a particularly quiet day at Cindy’s, so it’s a good day to go. We often have the place to ourselves.

Being beautiful is tough work

Mom, like a lot of older ladies has a pretty high maintenance hairdo. It’s permed and colored and must be curled and set at least once a week to keep looking good. It’s a multi-step process each week which begins with a shampoo. Then the hair is conditioned and rolled. She sits under the dryer for 20 minutes or so. Finally her hair is brushed and teased and sprayed into place.

The last final touches

Richard

He comes by for a visit every week or two. He usually brings photographs, or books or other things that my Mom might find stimulating. He used to work in China and has visited it many times since he retired. So often he brings pictures of people he met or places he visited.

Mom and her brother Richard

In the back, you can see a walker. We never did use that walker much. About a year ago, my mother’s gait began to disintegrate. In the beginning, her walk would sometimes become a stuttering step where she would end up kind of marching in place. It was as if her brain had forgotten some key step in the complicated process which is walking.

The neurologist explained that sometimes patients with dementia will have symptoms that resemble Parkinson’s. Within a couple of months, her walking had deteriorated to the point where most of the time she traveled from room to room with the blue transfer chair that Richard sits in above. It is sometimes possible to get her to walk short distances. You must stand in front of her, holding her with a gait belt and encouraging her to take every step.

All of her muscles seem to be there and she can control her legs in other situations. It’s as if the software, the instruction set which govern walking have disappeared, or rather just a few key instructions.

A year ago at Thanksgiving, we went out to eat with the whole family. Mom could walk, although the stutter stepping sometimes affected her. She could speak, although her speech was often labored. Now she cannot walk and her she is essentially mute. She can communicate via gestures, signs, etc. but actual words from her lips are very rare.

Mom, just after breakfast.

I got a new digital SLR camera yesterday. It’s my Christmas present to myself.

I’m guessing that for at least a time, I’ll be posting lots of images here. This photo is one of the many photos I took of mom today. I imagine she will be a frequent subject.

Last summer I made a series of videos about such mundane aspects of my life as going to a movie or riding my bike. And it’s not like I’m able to spin it into some amazing anecdote. I’m sure if a random person comes across those videos, they will most likely watch it, shrug and say, “What was that?”

Sometimes I think I just never outgrew that stage in life when you come home from school and say, “Mommy, mommy, look at this picture I made at school!” as I hand over this pathetic still life made from shapes of colored paper, crayons and glue.

What’s most difficult about this now is that many of the details of my life revolve around illness and family. The details are mostly private and should be. Many of the things I do feel like sharing, should really be saved for personal conversations, not public postings on the web. But still I do want to share a few things. I can’t help myself.

The other night I was sitting in a bar having a drink with a couple of people I had met through meetup.com. The subject turned to my situation with my mother. I was talking about my future plans, how I’d like to return to making theatre and teaching, but would have to wait. One of the women asked me, “So, you are going to do that after your mother dies?”

It was honestly a relief that she spoke of it like that. Her grandmother had died of Alzheimer’s so perhaps she just knew it was alright to talk about it bluntly. It’s much harder to talk when you are trying to be subtle.

I’ve recently had questions from people like, “When are you coming to LA?” or “When will you be back in New York to teach?” The answer is something that just doesn’t feel polite to say.

“When my mother dies.”

But of course, I search for other ways to say that. “When I’m not needed here anymore.” Or, “In a year or two.” Unfortunately that leads to other questions and draws the person in deeper, so that as some point I need to say what I wish I said up front, “I’m here till my mother dies.” And at that point it seems more like a rebuke than simple information.

There is such a terrible mix of feelings around taking care of someone who is dying of dementia. You love them. You want them to be comfortable and happy as much as possible. You want them to be better. You want them to be able to talk to you again. You want them to stop going through your pockets. You want them to stop pulling your hair. You wish you could roll back the clock a couple of years. You cherish simple moments when you get to hug them and you know that your presence is making their life better. And you wish you could jump forward a couple of years when this will all be over and you can start up your life again.

So if you ask me something about my future and I say, “After my mother dies.” I’m not trying to shock you or upset you. I’m certainly not trolling for sympathy. I’m trying to get that part of the conversation over, to let you know as succinctly as possible what my situation is here and why I’m not teaching in New York, playing poker in Arizona or hanging out in LA. I still want to talk about it, if you let me. I just don’t want to be coy about it.

However, I also want to talk about low carb diets, behavioral economics, evolution based learning systems, poker, and of course, improv. Oh and I may also tell you about the grill I bought last night to cook brats, or the strange rattle in my car, or how I got myself hooked on black coffee and now have to quit cold turkey.

Her emotional expressions have also been dulled by dementia. For instance, she doesn’t seem to express pain very often and you have to pay close attention to notice when she is upset or angry or happy. Eventually that too will go.

One thing that remains is her sense of humor. She loves to laugh, both at the things we do and at herself.

In between the TV room and the bathroom is the thermostat. Most times when we pass it, her hand will dart up and push the heat up to 85 degrees. I will move the little lever back down and she will giggle as if to say, “No use trying to get me to stop doing that, I’m being mischievous and I like it.”

The same used to be true for the dish washer, every time we put a single dish inside, every time we even passed it, she would press the start button and turn it on. Before we were with her 24/7, she must have run the dishwasher 5 or 6 times a day. For her a load of laundry could be a single towel or washcloth.

We learned quickly that it was impossible to reason with her impulsive behavior. The best you could do was come up with strategies to work around her impulses. Otherwise it would lead to frustration for everyone. For instance, when we passed the dishwasher, instead of telling mom, “Don’t press the start button”, I would simply cover it up. She would try to press the button anyway. She would reach for the button, see my hand covering it, then look up at me knowing it wasn’t time to press it, smile and giggle. It was as if she understood how irrational these impulses were, but couldn’t stop them and found them terribly funny.

The occupational therapist recommended that we keep her as active as possible. We should have her do as much housework as she is willing to do. So just now I pulled some towels out of the dryer and brought them in to her to fold. I left them with her and with B, our morning helper. I left the room for a few minutes. When I came back to see Mom’s progress, several of the larger towels were haphazardly piled in a stack. B pointed out the pile and I looked at Mom. Instead of being frustrated with her inability to fold towels, she just giggled and kept folding, or rather flipping around, the one she was working on.